The light, from the full moon, was twinkling off the water as we slid our kayaks into the lake. We had paddled here many times before, but there was always something special when paddling under a full moon. The small little lake hidden off an old road in Jefferson County, was absolutely beautiful. It was probably close to midnight when we loaded the kayaks back on the truck and headed for home. Little did I realize that the time it would be many years before I would return.
After my accident in 1999 I wondered if I would ever go back and paddle on this lake again. In my mind, I set it as a goal not knowing if it was even realistic. In the rehabilitation hospital in 1999 I read a quote in a book written by Christopher Reeve. It had a tremendous impact on my attitude toward my own rehabilitation. Reeve said:
“I refuse to allow a disability to determine how I will live my life. I don’t mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery.”
I began kayaking again in 2003. We had to start from scratch. No information was available on quadriplegics kayaking. Progress was slow. It took a group of people for me to go at all; as a result, I only got out a couple times a year. So improvements and adaptions were slow. Once I even tipped the kayak over and since I was completely strapped in and my hands strapped on the paddle would have drowned if it wasn’t for the quick thinking of two members of my “entourage”. Despite all of that, progress moved ahead, first pontoons, next a stadium seat whose back was raised by a local machinist, chest laterals were added and after much additional tweaking during my one paddle last year I decided everything was stable enough to go for my goal. Through all these years I was paddling on a large pond owned by good friends of ours. But in the back of my mind always was the dream to return to Payne Lake.
Steve fishing for bass
Yesterday, I awoke from the dream, many times in our lives, we imagine certain events happening and when they do they fall far short of the scenario that had been created in our mind. Yesterday the experience exceeded everything that I had hoped for. We paddled for several hours. My wife and I together on the water for the first time in over 18 years. The lake whose aesthetics I could only dream of were more imposing in person. By sheer accident, I paddled up on a heron, which I was unaware of, until I was almost on top of her. We watched her fly from spot to spot and even saw her catch a small fish. My friend Steve, without whose help I would not do half of the things I do, had a bass launch out of the lily pads to take his lure, but it slipped the hook during some aerial acrobatics. I live for opportunities like this.
What a special day.
The moral of the story is don’t stop dreaming. Dreams really can come true if you continue to work on them and refuse to give up.
Posted in Ability, Adapting Equipment, Adaptive Technology, Attitude, Behavior, Determination, Disability, Education, Friends, Friendship, Love, Nature, Observation, Reality, Recreation, Sensitivity
Tagged adapting, Caregiver, life lesson, lifestyle, natural environment, outdoors, physically challenged, quadriplegia, Recreation, using your mind
The phone was ringing. Shortly after my wife answered it, not only did I know it was our son, but I knew why he was calling. After a couple minutes she shouted to me “Mark wants to talk to you.” As I turned on the speaker my son said “Happy Anniversary.” I couldn’t believe it! We’ve been married 52 years. As our conversation came to a close, I told Mark that we’re going out to dinner at an extremely nice restaurant not far from here. Always looking to make a joke I said who knows “maybe I’ll get lucky tonight.” There was no chance of me getting lucky in the way this quote is usually used. Abstinence, while a choice for some, was just another behavior forced on us by my quadriplegia.
Wedding Day 1965
It is not unusual when I take questions and answers from a group I’d just spoken to for someone to ask me what do I miss the most. I always answer intimacy. Not sexual intercourse, which it 74 would probably not be a major activity anyway, but rather the subtle displays of affection that take place during a normal day. The warmth and security of a hug, a touch as my wife passes by or most of all snuggling in bed. All of these little shows of affection are extremely difficult for someone who was paralyzed and confined to a wheelchair. Once I’m placed in bed, I can only move my arms and my head. Being unable to roll on my side makes snuggling next to impossible. A hug with a person in a wheelchair is awkward at best. The physical presence of the chair combined with the fact that my wife has to bend way over makes contact difficult and as a result usually brief. At night or in the morning while I am still in bed, I will notice my wife walked by and touch my foot or leg. If I wasn’t looking I would never know that it had taken place.
In reality being a quadriplegic takes a lot of common everyday occurrences away from you. However, there are some things that you become more conscious of as a result of your disability. One of the first things that would be mentioned is the observation that the majority of people in our society are good, caring and loving individuals who want to do the right thing. Unfortunately, most programs on television or the Internet tend to focus on the small percentage of individuals who do not fall into this majority.
To get back to the original statement I made to my son little did I know that it was foreshadowing for the dinner ahead. Our waitress at the restaurant also works in my doctor’s office so she knew who we were. In the course of the dinner we mentioned to her that it was our 52nd wedding anniversary. When she bought our dessert there were a couple candles in it and we laughed as we blew them out. When it came time to pay she informed us that someone, who wished to remain anonymous, had already paid for our dinner. While the restaurant was pretty crowded we did not recognize anyone we knew. For some reason someone had reached out and touched us. People should know the strength and ability to persevere, we draw from such acts of kindness. The reaching out of people like this helps give us the strength we need to move through the struggles that we face in our daily lives. Thanks to all of you who reach out to all of us. Oh, and by the way I did get lucky that night.
Our family on our 50th anniversary
Posted in Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Humor, Love, Observation, Reality, Sensitivity, Stuggling
Tagged 50th wedding anniversary, life lesson, lifestyle, physically challenged, power wheelchair, quadriplegia, relationship, society
We can call him Tommy and he definitely was a son of a bitch. Even given that, everybody still like him and he was popular in the neighborhood until he was hit by a car. Unfortunately, Tommy’s back was broken and he was left paralyzed. After that people didn’t seem to care about him that much anymore.
Then Tommy met Susan Fulcher and she was ready to help Tommy just like she had helped dozens of other dogs who were paralyzed. Susan runs the Dharma Rescue Organization in Los Angeles California. As I watched the video and listened to the reporter on the CBS Evening News last night I knew this was something that I wanted to share. Each dog is fitted with a custom “doggie wheelchair” and then helped to adjust to their new lives helping others.
What struck me about the report was the dogs’ ability to quickly overcome and adapt to their disability and new life. I started thinking they must have accepted what had happened to them, did little or no reflecting about the what ifs and so were ready to move on. While I was going through rehabilitation at Craig hospital, I was overcome by the thought that my new life would be unproductive and I would just exist until I passed away. After a while, I began to realize what happened to me in my new life was almost completely under my control. I made some mental (attitudinal) adjustments and began to move on with a more positive outlook. These dogs just move on approaching their new life with enthusiasm and thus have the ability to help others. It is absolutely critical, I believe, for an individual who has suffered a catastrophic life changing event to accept what has happened to them and move on. Little good can come from dwelling on what has happened and wondering about the what ifs.
It was years ago, after Christopher Reeve’s injury that his attitude of nothing was going to prevent him from walking again caused dissension in the disabled community. He finally realized and accepted the fact that he would be paralyzed for the rest of his life. I don’t think an individual can move forward with their life if they refuse, at least on a conscious level, to accept what has happened. Let these dogs serve as an example of what can be accomplished if we are willing to accept what has happened to us and move forward.
Posted in Ability, Attitude, Community Inclusion, Determination, Disability, Education, Friendship, Love, Nature, Observation, Pet Therapy, Reality, Sensitivity
Tagged adapting, control, lifestyle, physically challenged, quadriplegia, relationship, society
At Craig Hospital, where I did my rehabilitation, they talked about how people would react to me, post injury. They said there would be former friends who would fade out of my life and others who would step up and assume a much more significant role. I didn’t realize at the time how true that would be. While some have virtually disappeared, several people have assumed a significantly greater role and others who I barely knew or didn’t know at all have helped facilitate the return of my quality of life. As a C6 quadriplegic my life is one of dependency. I may like to kid myself into believing I have a lot of independence, but the truth is I don’t. I’m dependent on others for my food, hygiene, dressing, even getting into and out of my wheelchair. My wife Marge and my nurses Rhonda, Char and Kelli see to those needs and at times do much more.
Me in the old days
One person, in particular, has really stepped up. He is not the only one, but Steve Robinson, a former coworker has stepped up like no other. Steve takes me hunting, to lacrosse games and does so much more. What would my life be like without friends like him I can’t imagine? Thankfully, I don’t have to.
Does Steve realize the important role he plays in my life? Does he understand what my life would be like without his unselfish generosity? Does he have any concept how impossible it is to find the words to help him to understand how much his stepping up affects my quality of life?
Steve with Andy and me at Blue Mountain Museum
Steve and I dog sledding
Now I have a chance to do something for him. Steve and I worked together on the school’s outdoor adventure course. On September 17th the Northern New York United Way is having a fundraiser called Over the Edge. Steve is going over the edge. Steve wrote “Over 20 years ago a good friend and a former South Jefferson colleague introduced me to the power and excitement of a ropes course. I know that if he could, he would have been one of the first to sign up for this United Way fundraiser. I will be doing the rappel in recognition of my friend and mentor.”
I would like to take this opportunity to ask my friends, if possible to consider making a donation to Steve effort. If so you can go to Steve’s Home Page to donate. Thanks to Steve and all of you.
Celebrating Steve’s retirement with my first beer in over 25 years
Posted in Attitude, Behavior, Birds, Disability, Education, Friends, Friendship, Love, Reality, Recreation, Sensitivity
Tagged life lesson, outdoors, physically challenged, quadriplegia, Recreation, relationship
Within recent days I’ve received emails from several friends all struggling with the challenges presented to them by their disabilities. Of them, I am the oldest and I’m pretty sure I have been dealing with my disability the longest. I wish I could do something or make a potion that would make these challenges disappear. But, I know, as they do, that dealing with these crises is not that simple.
Andy and his grandson
Early on, after my injury, it was so important to me for people to understand that my injury was the result of an act of nature rather than a situation I had brought on myself by poor behavioral choices (i.e. Drunk driving). I didn’t want people thinking he got what he deserved. I was always grateful that my quadriplegia was the result of my pursuing an activity that I loved. Even though I was standing in waist deep water when caught by the wave I had actually been body surfing for several hours. A couple of the emails were from people who had been injured while mountain biking. Another was result of the onset of cancer and complications after a stem cell transplant. All causes were out of the individuals’ control. Why them, why me, these are questions we may never find the answers to. Personally, I feel all my pre-accident life was a preparation for my life now. It is comforting to me to think Handihelp, the blog and my public speaking may be helping others, which is all I wanted to do when I became a teacher.
What can be done, what words can be said to ease the physical and mental struggles that those of us in the disabled community deal with almost daily. It’s been my observation over the years that the best “solution” lies in the individual’s mental makeup. The single most important factor is an attitude which can be manipulated. If you look at my early blogs, most of them deal with that topic. When speaking to groups there are a number of observations that I have made over the past 17 years that I believe will be helpful in putting life and life challenges in perspective.
* Life is not fair and owes us nothing.
* Anger, over time, is detrimental to moving on.
* Life is precious; each day is a gift and one should take some personal time each day
to enjoy it.
* Life can be good again, enjoyable again, but it will never be the same. The
sooner a person realizes and accepts that, the better off they will be.
* The most powerful “tool” we have in adjusting to our situation is our mind/attitude.
* It may be difficult, but to ask for help is not a sign of weakness, and
there are many people who wish to help, but you may have to take the initial step.
* Love is an amazing thing, the more one gives, the more one has to give.
* A pet can play a major role in the life of an individual with a disability.
* Love makes everything easier.
* You can’t do it alone. Friends make our lifestyle much more bearable.
* There is a solution to most of the challenges one faces. It’s just a matter of how
much thought, time and effort you are willing to commit to finding it.
* Frustration and struggle will always be part of this new lifestyle.
* Nothing comes without sacrifice.
* Advice is easy to give, but much more difficult to take and even harder to act on.
* Laughter is essential.
* We are all stronger and more capable than we think.
* Life is full of risk.
What a comfort she was
Will this help others? I hope so, but it has helped me.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Love, Observation, Reality, Sensitivity, The Struggle
Tagged adapting, control, Courage, depression, dietary considerations, life lesson, lifestyle, physically challenged, quadriplegia, using your mind
Can you possibly understand the role you play in your patients’ lives? I received a Christmas card the other day (February 10) from a woman I haven’t seen in probably 14 years. She played a critical role in my life 17 years ago when I was a rehabilitation patient at Craig Hospital. I was so scared when I got there. My stay at Craig was almost 5 months because of the stage four pressure wound on my sacrum. It was the result of being strapped to a backboard for over 36 hours. Most of the first 3 months were spent cleaning the wound to get it ready for skin flap surgery. Much of this time I was unable to speak because of the tracheotomy.
Marsha (your hair looks fine)
A young woman named Marsha was one of my nurses. She was beautiful, funny and had an infectious laugh. She provided my care in a manner that made me feel special and safe. We have kept in touch since I left and even saw each other once when I went back for a reevaluation. I often wonder if she has any idea the critical role she played in my recovery. She has since left Craig and has a family, but still lives in the Denver area.
Marsha work days, but the most difficult time for me was during the night. I had become afraid of the dark and absolutely petrified to be alone. I had a boom box which my wife loaded with CDs before she left. Everything was manageable until the music shut off. In a matter of minutes I would have full-blown night terrors which turned me into a raving maniac. It got so bad that the nurses would wheel my bed out to the nurses station so they didn’t have to continually come into my room to calm me down. There was another young nurse who worked nights. I have long since forgotten her name. I can still hear her soothing voice as she tried to calm my hysteria. Things were always a little bit better when she was on duty. When I returned to Craig for a reevaluation I was saddened to find out that she had left and joined a traveling nurses group. In a wonderful effort to calm my fears she and Marcia bought two packages of the luminous stars and pasted them on the ceiling over my bed. At night the stars would radiate light for a while and then gradually dim and turned dark. When I was getting ready to come home, she came and had her picture taken with me and told me in a soft voice that she had only been a nurse for about six weeks. I was amazed.
When my wife and I were told at Craig that my quadriplegia would require someone to come to my house daily to help with my needs, get me dressed and in a wheelchair I was dumbfounded. I had always been a very private individual and prided myself on my independence and self-reliance. The thought of a stranger coming into my house every day was more than I could fathom. Rhonda began working for us about a year after I came home. She’s worked now for more than 16 years and has become a part of our family. Her job description has grown to much more than that of a nurse. She is always willing to take part in my little adventures and to step up when I need help. One good example of this is the day she drove into my neighbor’s field hooked a tow strap on my wheelchair, which had become mired in the mud, and pulled me out with her four-wheel-drive truck.
I wonder if nurses know the critical role they play in their patient’s life. I am positive my rehabilitation would not have worked out as well as it did without Marcia and the other nurse from the night shift. Rhonda’s always willing to help attitude, has enabled me to pursue activities I never would be able to do otherwise. I look at the role these women played in my life and wonder if they can truly grasp how critical their care and support really is.
Posted in Attitude, Behavior, Community Inclusion, Disability, Education, Friendship, Love, Observation, Reality, Sensitivity
Tagged Caregiver, life lesson, physically challenged, quadriplegia, relationship, society